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Comments Off on April 2, 2014 – World Autism Awareness Day Events @ United Nations

Below are the events happening @ the United Nations for World Autism Awareness Day. If you can attend, I would encourage it. I had the pleasure and the privilege of being invited to speak there last year’s autism event, and it was such an exciting and surreal experience for me. Who would’ve ever thought a rookie autism advocate like me will speak about autism at United Nations world stage, I certainly did not. 



I am very excited this year for Melissa Diamond from Minnesota that my good friend Jacqueline Aidenbaum who along with her husband created UN Autism resolution has invited Melissa to speak. More information will be posted at the United Nations Website for those that can not attend.




Events in 2014 – WAAD (World Autism Awareness Day)


Inclusion in Practice



  • Zulfikar Alimuddin, Founder, The Autism Center, Jakarta, Indonesia

  • Shirley Cohen, Professor Emeritus, CUNY/Hunter College, Author and Co-developer of the ASD-Nest program hosted by the New York University

  • Melissa Diamond, Founder and Director, A Global Voice for Autism – The Jenin Autism Project

  • Aaron Lanou, Director of Professional Development, the ASD Nest Support Project, NYU-Steinhardt

  • John Miller, Self-Advocate andAsperger’s and Autism Facilitator, Boca Raton Middle School

  • Students from the IS.75 Paulo Intermediate School, Staten Island



 



For info and event updates:
http://www.un.org/en/events/autismday/

Category: Uncategorized

Comments Off on A Community Divided is a Community Defeated – We Reject Rep. Kahn and Her Divisive Politics

OK, by now – we all heard Rep Kahn is fighting with tooth and nail to sustain her seat at MN Capitol  representing Cedar/Riverside area, otherwise called District 60B.

There is a lot rumors going on around Cedar area whereby Rep Kahn is playing the politics of divide and conquer. Divide our community by promising this grant, that contract and her seat when she retires. You see if you are familiar with American politics then you know it is not by inheritance or giving your elected seat to your friends.

Rep Kahn has been telling some Somalis in Cedar bunch of false information and filling their head with hopeless hopes and unreachable dreams. First of all, Rep Kahn can not transfer her seat to anyone including her family. Whoever wants to represent will have to run in a democratic way and win by votes of the constituents. Therefore, no matter how many times Kahn says you can have my seat when I retire is wrong, false and full of hopeless dream. Rep Kahn, We Reject Your Late and Hopeless Proposal – It is 40 Years Too Late.

2ndly, No one should  believe Rep Kahn will grant them some kind of a contract with either the state or with the city of Minneapolis. Think about this for a minute – if Kahn really cared about this district’s well being – they would not be at the bottom of every pit in every area, from education gap to health disparity to high unemployment to low homeownership. See those stats of Minnesota’s embarrassingly racial disparities created or at least maintained by current politicians. Furthermore, what has Kahn done to assure the new multimillion dollar Vikings Stadium includes Somali businesses and Somalis for the new construction.

3rd, If Kahn really cared – why not write legislations to offer funding and resource opportunities, oh I don’t know – maybe couple of decades ago. Rep Kahn currently serves as Chair of the Legacy Committee. In addition, she is a member of the Ways and Means which is a very powerful committee that most important bills must go through. Government Operations, State Government Finance (She could have advocated here for this community) She is also a member of the Legislative Commission on Pensions and Retirement. Honestly, how are Somalis doing in their retirement and pension plans. Her legislative interests include issues dealing with information policy, natural resources and women’s rights. I am sorry, but women’s rights and information – come on now. How are Somali women doing in getting information about their rights and being empowered. This would be all too funny, if it was not all sadly true.

You see – Rep Kah does not give a horse’s you know what about the women in district 60B, their pensions, retirement plans or their prosperity because if she did – you would not see everyday a Somali or an East African woman in Brian Coyle struggling with her children, with lack of affordable housing, with work and everything else. Really – you would not.

In terms our children’s health which Autism is a big part – as Somali Autism mom and advocate – I can not name one thing Kahn has done to help us with. Rep Kahn has dismissed, disregarded and refused to listen to our voices and our pain with autism. In fact, when she was asked why she voted to eliminate MN Autism Task force which has done so much good for Somali autism families – her response was “well everyone else voted for the elimination”. I can’t think of a more out of touch excuse. It is like your child saying “well – I did it because everyone else was doing it”. What the heck does that even mean. You don’t jump off a bridge because everyone else is jumping from it. Rep Kahn should’ve asked why eliminate a free, all volunteer, parent based and advocate empowered statewide autism task committee that is responsible for several Somali, Latino, Caucasian and Hmong autism studies.

In sum, if Rep Kahn promised you a seat, a grant or a contract – she simply can’t and will not deliver that. They say history is a good indicator of one’s future actions. Well, Rep Kahn’s history is full of despair, disparity and dismissal for district 60B.

It is time for Somali community in Cedar/Riverside area which by the way is the only district we can have any future of sitting at the political table to UNITE behind Mohamud Noor. Noor cares, Noor will listen, Noor will validate, Noor will bring resources and opportunities to everyone fairly and equally. Noor is the right person, it is his moment and we should ALL stand behind him with no hesitation and no reservation.

High unemployment for minorities statistics:

From the cradle to the prison pipeline:

Home-ownership gap for minorities:

Health disparity for minorities statistics:

Worst Education Gap for minority children:

Vikings Stadium and Minorities in the Pie:

Racism, Bias and Prejudice Policies are the cause of Racial Disparity: Think about this, who writes or maintains these bad policies – Kahn, Norton, Cohen, Huntley, there are more, but you get the idea. We can not wait another forty years to wake the heck up. We need to do it now and unite behind Mohamud Noor. He is the right person and this is the right time. 

Thanks!

Above words do not reflect any agency, committee or candidate

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on Separating Facts from False Myths Regarding Minnesota Autism Task Force

Unfortunately, Rep Norton who seems to have so much time on her hands this session decided that eliminating the only statewide autism free and all volunteer committee was the right thing to do. As a result, Norton has spread lots of incorrect information in order to sell this HF 2282 in committees. So, here are facts and false information.

Fact – Minnesota Autism Task Force Does not have a Final statewide plan yet. It only has a draft that is not even yet well discussed and no sub groups to finalize per recommendations yet formed.

Fact – Minnesota ASD TF has met monthly for years even though meeting that many times is not in its charge.

Fact – MN ASD TF has done a lot of good including many research and policies, such as a new study just released last week done by school of public health in collaboration with MN health dept, Confederation Somali Community of MN, Latino and Hmong communities highlighting the barriers for those families in accessing and understanding autism. MDH should post this study soon in their autism website.

Fact – MN State legislature passed a first in its kind Autism Medicaid therapy coverage for children from birth to eighteen years old that will cover behavioral and developmental services. This happened because of the work and recommendations from MN ASD TF.

Fact – state of MN received half million dollars in funding and resources from Federal agencies to study autism prevalence in Somali, Caucasian, Hispanic, Hmong, Native American and Black – Non Somali children in Minneapolis. This was possible because of the work of members from the MN ASD TF. See that study here.

Fact – MN ASD TF is cost free to the state, all volunteer based, has parents, advocates, doctors, funders, state agency reps and state legislatures all working hard to support the over 17, 000 Minnesota autism children and their families. See charge here. And, membership here.

Fact, MN ASD TF is suppose to sunset and end in June 2015 on its own per its charge which would give enough time to finish its work by not just sending a not ready draft, but a ready statewide plan that all stakeholders are in the process in creating and implementing.


Fact, Sadly, all of the MN DFLer’s (the ever-welcoming, sooo progressive, sooo moving forward, loves committees, increased their own house committees in 2012) that were present voted to take away parent voice, advocate ideas and eliminate MN Autism Task force. 


Fact, All of the MN GOP’s present (ever inclusive, reasonable, helped Somali autism, did the first Somali autism study and the last one, created MDH autism website, started DHS autism benefit & wrote this task force) voted to keep parent voices at the table. Think about that for a minute, especially if you are a minority specifically Somali how you voted and how you will vote this year. Insanity is voting for the same people and expecting different policies or ideas.


Fact, Rep Ward – DFL who represents district 53A offered to change this autism task force to again free advisory autism committee and the hard core Putin like Norton and Liebling refused that offer, Imagine that.


Now, despite all of good and amazing work done by a group of folks that come from very different background, communities and regions of the state, Rep Norton has started false and nasty rumors to support her HF 2282 and dismantle, disband, dismiss, disregard and disrespect the hard work of so many in the autism community.


Additional facts – it turns out that Minnesota department of health is helping Rep Norton to eliminate the free MN Autism Task Force, go figure. Apparently, MDH representative sent the call in number for the last meeting at 7:56am. The meeting was suppose to start at 7:45am, then man
y had trouble with the call in number and did not call until towards the end at 8:30am. Yet, MDH apparently wrote meeting minutes stating there was a quorum at the beginning of the meeting. How exactly is that humanly possible? It is not. Not to mention this draft was written by Rep Norton and Mr. Trahan who is not even a member anymore and no discussion by more than half of the members. Yet, somehow Norton and MDH are trying to convince us that they had a quorum, it was open to the public via following open meeting laws, was written and discussed by majority of the members who then voted on it. Ain’t that all just convenience? 


I always thought African government wrote and dictated policies. Well – I guess Rep Norton and MDH do it here in the land of free democracy. Sad and cruel by the state health agency to be in bed in bad policy with Rep Norton and Sen. Eaton who just introduced the sister bill in the senate today SF 2892. Why are Norton and Eaton always against autism families, especially low income and minority communities?

False rumor – MN ASD TF does not meet or function smoothly. I am sorry, but I like to see a group of folks talking about autism that gets along with anything autism. If you google any autism committee, blog or advocacy agency, there are so many disagreements in cause, cure, services, ABA vs RDI, Floortime, alternative medicine, biomedical therapies, vaccines, vs genetic to you name it. Autism is extremely emotional, complex, confusing and there are hardly any agreements on anything. Think about this, you have a perfectly healthy child and something goes wrong around two years. You take your child to the doctor and the doctor tells you – he/she has autism which has no cause, no cure, and lasts a lifetime, have a nice day. Tell me what parent is going to be happy about that. So, yes autism mothers have the same level of stress level similar to a soldier in a combat. See that here.

False rumor – MN ASD TF does not meet. Wrong, because they have met more than it was even recommended by its charge.

False rumor – they have not accomplished anything. Just see how much MN and autism has been brought to light all the way to the White House, to NIH, to CDC & to the United Nations. The only place we have not taken autism is the moon. This by far is the most hurtful false rumor by Rep Norton.

False rumor – MN ASD TF has finished its work. This by far the worst lie since everything including all meetings and meeting minutes are public in following open meeting laws – as you can see there is incorrect and false rumor being told by Norton to state legislators.

You see – many other states are starting and passing State autism commissions that are permanent and funded with staff and resources. Here in Minnesota – the land of 10,000 lakes and 10,000 racial disparities – Norton and her associates are eliminating the only free one that exist. Instead, they could create an autism plate, an autism commission, an autism wandering prevention given the high rate of autistic kids wandering as research states, an autism family coordination center housed in DHS, update and modify autism waivers and allow physical activities to be part of waiver funding since obesity is prevalent in autistic children. etc and etc. They can even allocate resources to start a statewide surveillance system which we don’t have. I mean rather than do good in moving us forward the MN DFL controlled house wants to abandon the little we have accomplished. Imagine the frustration of that thinking and the disconnect of that.

As they say – if there is a will, there is a way. I along with so many Somali autism families are determined to defeat Norton at the polls and even if we don’t succeed this fall, we will try until we do. They say to get good fruits, it is best to plant great seeds. We need to plant and elect legislators that will write good policies and Norton ain’t one of them.

Help us defeat Rep Norton this year or until her bad seed autism policies are out of MN House. Let me repeat again, insanity is voting for the same party or folks and somehow expecting different results. It ain’t going to happen, we must vote smart and wise based on their votes, their policies and their inclusiveness – not their useless campaign words, but with what they do when they get to the state Capitol.

Thanks!

Above words do not reflect any agency, committee or candidate.

Idil – Somali Autism Mom & Minority Advocate (determined to fight for autism families from every valley, river and mountain)

Category: Uncategorized

Comments Off on Rep Norton wants to play with more fire in Autism and now wants to change Medicaid Autism Therapy Law Passed 2013 by Introducing HF 2700 (why is she obsessed with Autism and Low income families)

Have you ever wondered what motivates Rep Norton who always seems to introduce legislations that throw low income autism families and minorities under the bus.

I mean ever since spring of 2010 – we have been fighting her bias and prejudice policies, and even though she keeps losing in her discrimination laws – she keeps coming back with more.

Now, she has done it again. HF 2700 just introduced this session is the work of the red Tshirt wearing upper/middle income of mostly Caucasian autism families and their hot shot K street like lobbyist. If you remember, this group without even a blink thought they could take over $25 million from the health and human services budget last session. They wanted the state to supplement their private insurance and pay for unlimited age and hours of ABA (applied behavior analysis) autism therapy.

Since that did not work because when you take millions from health and human services budget – the poor, disabled and everyone else suffers. All for what to add to already buttered folks. Well – sadly, they are back again with a new bill number HF 2700, but the same unequal language.

In addition, HF 2700 wants to alter and change the really good, fair and equal Autism law that passed last year for children with Medical Assistance (MA) which has objective and reasonable language.


Norton and Company now want to even mess with that. I kid you not.

On a side interesting note, apparently – this group which as I said has zero provider of color and refused to include minority low income voices testified for Norton to kill MN Autism Task Force, even though many of them were trying to get in into the Autism task force in 2011, including their leader and owner of Lovaas – Dr Larsson.

I guess as the saying goes – if I can’t be in it, then it must be eliminated and destroyed is true here. Even the previous Autism chair, Mr Trahan now wants to eliminate the MN Autism Task force. If you remember in my previous blogs, Mr. Trahan resigned because he kept refusing to follow open meeting laws and did not want the health dept to share Federal grant from HRSA (Health Resources & Services Administration) with Minority based agencies. Keep in mind that we in the Somali Autism Community were the only ones that advocated at the Federal level so that funding for HRSA was possible through CARA Law that President Obama signed into law on Sept 30, 2011. Yet, when the money became available, the mostly privileged Caucasian folks wanted to hog the resources. Imagine that level of disconnect and bias.

Further, back in 2009 when Sen Ann Lynch a DFLer from Rochester wanted to not even start the MN Autism Task Force – Mr Trahan was against her. He even went with us to Somali TV of Rochester and advocated in our community to vote against Sen Lynch. The irony is now since he is no longer in the committee – he wants it to end. I know if you are getting a headache from reading this, imagine how I and others in the minority autism community feel.

Anyway, with Mr. Trahan’s help – we did campaign against Sen Lynch who lost in 2010. Maybe we can have the same luck in 2014 and Rep Norton will LOSE the 2014 election. From this blog to God’s ears. Another related note, I saw Amira, a Somali woman in Health Policy Committee in MN House last week, learning about health policy. I almost partied like it was 1999. The more folks that reflect us – the better policies will come from policy makers who seem to get amnesia after they win.


Thanks!

Above words do not represent any committee, agency or candidate.

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on Upcoming IACC Meeting in April – Autism Awereness Month

Below is the upcoming Federal Interagency Autism Coordinating Committee to be held in Bethesda, MD – NIH Campus. This committee sunsets this year, but advocates and families are working with many members in Congress to reauthorize Combating Autism Act. 

On a side note, can you imagine if state legislator and queen of autism disparity was a member in Congress. Norton would probably be working towards a way to dismantle & eliminate the Federal autism committee as well. I guess we should count our blessings her damage is limited to Minnesota autism families and not nationally.
Members of the public can send their comments or questions for the committee before the deadline. April is autism awareness month – please be kind and have compassion always, but especially this month towards all autism families and autistic individuals. 
Above words are my own and do not reflect any committee, agency or candidate.
Idil – Somali Autism Mom & Minority Advocate
Below is the meeting information:

IACC Full Committee Meeting

Date: Tuesday, April 8, 2014
Time: 9:00 a.m. to 5:00 p.m. Eastern
Place: National Institutes of Health
31 Center Drive
Building 31, C Wing, 6th Floor, Conference Room 10
Bethesda, Maryland 20892
Map and Directions
Cost: The meeting is free and open to the public.
Agenda: To discuss committee business, updates and issues related to ASD research and services activities.
Access: Medical Center Metro Station (Red Line)

On-site parking is available for a fee, but very limited. 

In the interest of security, NIH has instituted stringent procedures for entrance onto the NIH campus.  All visitor vehicles, including taxicabs, hotel, and airport shuttles will be inspected before being allowed on campus. Visitors will be asked to show one form of identification (for example, a government-issued photo ID, driver’s license, or passport) and to state the purpose of their visit.

Registration: On-site registration is from 8:30 a.m. to 9:00 a.m. Pre-registration is recommended to expedite check-in. Seating in the meeting room is limited to room capacity and on a first come, first served basis.

Online pre-registration This link exits the Interagency Autism Coordinating Committee Web site will close at 5:00 p.m. Eastern Time the day before the meeting. After that time, you will need to register onsite the day of the meeting.

Webcast Live: http://videocast.nih.gov
Conference Call Access: Dial: 888-950-8042
Access code: 8689681
Deadlines: Notification of intent to present oral comments: Tuesday, April 1, 2014 by 5:00 p.m. Eastern

Submission of written/electronic statement for oral comments: Wednesday, April 2, 2014 by 5:00 p.m. Eastern

Submission of written comments: Wednesday, April 2, 2014 by 5:00 p.m. Eastern

Please note:  The NIMH Office of Autism Research Coordination (OARC) anticipates that written public comments received by 5:00 p.m. Eastern, Wednesday, April 2, 2014 will be presented to the Committee prior to the April 8th meeting for the Committee’s consideration. Any written comments received after the 5:00 p.m. Eastern, April 2, 2014 deadline through April 7, 2014 will be provided to the Committee either before or after the meeting, depending on the volume of comments received and the time required to process them in accordance with privacy regulations and other applicable Federal policies. Please read the IACC Public Comment guidelines.

Contact Person: Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC, Room 6182A
Rockville, Maryland 20852
Phone: (301) 443-6040
E-mail: [email protected]
Public Comment: Any member of the public interested in presenting oral comments to the Committee must notify the Contact Person listed on this notice by 5:00 p.m. Eastern on Tuesday, April 1, 2014, with their request to present oral comments at the meeting. Interested individuals and representatives of organizations must submit a written/electronic copy of the oral presentation/statement including a brief description of the organization represented by 5:00 p.m. Eastern on Wednesday, April 2, 2014. Statements submitted will become a part of the public record. Only one representative of an organization will be allowed to present oral comments and presentations will be limited to three to five minutes per speaker, depending on number of speakers to be accommodated within the allotted time. Speakers will be assigned a time to speak in the order of the date and time when their request to speak is received, along with the required submission of the written/electronic statement by the specified deadline.

In addition, any interested person may submit written comments to the IACC prior to the meeting by sending the comments to the Contact Person listed on this notice by 5:00 p.m. Eastern on Wednesday 8, 2014. The comments should include the name, address, telephone number and when applicable, the business or professional affiliation of the interested person. NIMH anticipates written public comments received by 5:00 p.m. Eastern, Wednesday, January 8, 2014 will be presented to the Committee prior to the meeting for the Committee’s consideration. Any written comments received after the 5:00 p.m. Eastern, January 8, 2014 deadline through January 13, 2014 will be provided to the Committee either before or after the meeting, depending on the volume of comments received and the time required to process them in accordance with privacy regulations and other applicable Federal policies. All written public comments and oral public comment statements received by the deadlines for both oral and written public comments will be provided to the IACC for their consideration and will become part of the public record.

Core Values:
In the 2009 IACC Strategic Plan, the IACC listed the “Spirit of Collaboration” as one of its core values, stating that, “We will treat others with respect, listen to diverse views with open minds, discuss submitted public comments, and foster discussions where participants can comfortably offer opposing opinions.”  In keeping with this core value, the IACC and the NIMH Office of Autism Research Coordination (OARC) ask that members of the public who provide public comments or participate in meetings of the IACC also seek to treat others with respect and consideration in their communications and actions, even when discussing issues of genuine concern or disagreement.
Pleas Note: Remote Access:
The meeting will be open to the public through a conference call phone number and webcast live on the Internet. Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. If you experience any technical problems with the webcast or conference call, please send an e-mail to [email protected] or by phone at 41
5-652-8023.

Special Accommodations:
Individuals who participate in person or by using these electronic services and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the Contact Person listed on this notice at least 5 days prior to the meeting. 

Security:
In the interest of security, NIH has instituted stringent procedures for entrance onto the NIH campus. All visitor vehicles, including taxicabs, hotel, and airport shuttles will be inspected before being allowed on campus. Visitors will be asked to show one form of identification (for example, a government-issued photo ID, driver’s license, or passport) and to state the purpose of their visit. Also as a part of security procedures, attendees should be prepared to present a photo ID at the meeting registration desk during the check-in process. Pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

Category: Uncategorized

Comments Off on A Global Autism Voice – Melissa Diamond, an Inspiring Story

Autism is hard in the U.S and developed countries, can you imagine in developing and third world countries. It is excruciatingly difficult. This is why United Nations created World Autism Awareness Day (WAAD) on April 2nd which is just around the corner.

I was invited to speak there last year by Jacqueline, an autism mom originally from Argentina. Jacqueline and her husband were the pioneers behind the creation of WAAD. As a result of that event in 2013, I’ve met one extraordinary young American Woman who is Jewish descent – Melissa Diamond. And just like her last name, Melissa has been a diamond for autism parents in Jenin, West Bank, Palestine. Think about that for a minute.

A Jewish American woman helping Muslim Palestinian Autism Parents. And, they say there can’t be peace in the Middle East. Maybe if Secretary Kerry chatted with Diamond, she could help him.

Anyway, Melissa is now in Jenin where she blogs from and posts information on her Facebook page. She and her team are helping, educating and empowering Palestinian autism parents. They are teaching them behavior therapy, how to get resources and services for their children. Melissa started Global Voice For Autism which can do therapy through SKYPE for parents.

I am simply amazed and encouraged that this world which sometimes can be cold and cruel is still warm and welcoming because people like Melissa exist.

Melissa will be speaking at the U.N Autism event this year and was just invited by my good friend Jacqueline. I can’t wait to hear her inspiring ideas and creative ways to bridge the autism gap worldwide.

Autism – while it can affect some ethnic groups more or less and vary in severity, for the most part has no borders, color, race or ethnicity. It can hit you like a brick in your heart if you are not prepared for it. Unfortunately, while I think and often complain this country’s services – most of the world is light years behind.

In sum, let’s help all autism families and all autistic individuals irrespective of where they are from or live.

If you are an ABA (applied behavior analysis), SLP (Speech & Language Pathologist), OT (Occupational Therapist), Special education teacher, Psychologist or any therapist or educator in the field of autism and you want to volunteer at Global Voice For Autism, Please contact Melissa. You don’t have to travel around the world if you can’t. You can help through Skype. If you are a parent and you want to support those now getting the ASD diagnoses, please contact Melissa as well.

It is well worth the time and imagine how much good you will feel for helping another family in need. 

A Global Voice For Autism:


How WAAD was started:

Thanks!

Above words do not reflect any committee, agency or candidate

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on HF 826 – Anti Bullying Legislation Bullies Parents by Keeping Them in the Dark – Why?

Alright, so if you live in Minnesota and follow any policy or MN local politics, you have heard of the highly contested anti bullying legislation going through the MN Senate now.

First, no child should be bullied for any reason. All children should feel safe and supported in their learning environment. I totally understand what that is like since I came to the U.S at a very young age and as the new kid, the new immigrant & the only Black in many classes was bullied.

However, whenever that happened my family were notified along with the other child’s family.

HF 826 wants to take away parent notification and parent involvement. It wants to leave that decision to the school district. Let’s think about that for a minute. For example, we know that Minnesota has a horrible record in suspending and expelling minority children, especially Black and Latino at a disproportionately high rate. We also know children of color are years behind in education and testing as we have one of the worst education gap between Black and White students.

But as that was not enough power given to school districts that clearly have failed our communities, HF 826 wants to give them even more authority to not even inform a parent if their child bullied or was bullied. Imagine being out of the loop of such important decision of your child’s life. Then imagine your kid being labeled a bully and you were not aware because the school district with the already bad record decided to keep you out of the loop.

Furthermore, if you work with children with autism – you know that many of them are routine oriented and repeat the same sentence or words over and over. They can say something they heard a month or even a year ago maybe at a mosque or in your home anywhere without regard of its consequences. Imagine if your child with autism maybe heard your culture or religious values which you have a right to instill in your family and then repeated that in school to another student who might find it offensive. He is now going to be labeled a bully and you as a parent might not even be aware of it.

This bill has a language that includes putting your child’s disability in their IEP, but the problem is the parent has to request that. And, if you have a child with special needs – you understand how confusing, complex and intimidating IDEA law is which governs IEPs. Therefore, rather than protecting ALL kids from any bullying and empowering families while educating staff – HF 826 sadly wants to bully parents or those with different values, culture or religion by keeping them in the dark and out of the loop.

I think it will increase the already horrible high rate of Black and Latino suspension rate. It will also leave all parents out of the loop which is hurtful, especially parents with children with Autism.

Do we need a statewide anti bullying legislation that assures the safety and support of all children. Of course. However, it should be one that is fair, equitable and empowers parents. If you are a Somali that works in a school district and helps parents, please let them know of this bill. It will negatively impact their families because they will no longer have rights of knowing what happened in school. This will diminish parents responsibilities because they will be in the dark and how do you parent when you are out of the loop of your child’s behavior in school.


Here is the current language of HF826:

Here is the high rate of Black children suspended from school:

Here is some information on when autistic children just repeat words/sentence:

Thanks!

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on Eliminating MN Autism Task Force Legislation HF 2282 Passes Liebling’s Committee despite Objections from Somali Autism Community and MN GOP legislators

OK, so this session just started and I am already tired and frustrated. So many MN elected officials that win big in Minority communities neglect our issues when they get to the Capitol.


Last week in the House Government Operations Committee chaired by Rep Nelson voted to eliminate MN autism task force which is voluntary and has done so much good already. It delivered a one two punch against Somali autism families.


If you remember HF 2282 is written by Rep Norton – DFLer from Rochester and the queen of autism disparity. This bill wants to eliminate and dismantle MN Autism Task Force now rather than sunset in 2015. Norton wants to hand over all of the power and decisions about autism to MDH, DHS, MDE and DEED. These are the state agencies in charge of health including autism.


Keep in mind MDH can’t even follow simple CLAS (culturally and linguistically appropriate guidelines) in their website, phone line and has refused to look into autism research thus far. Rep Norton now want to give them more authority to screw autism families.


MDE while many of them well intentioned clearly is failing given the recent UMN autism study that stated majority autistic children in Minnesota are not getting diagnosed with autism until age five which is three years late. In other words, their Part C can’t even inform and educate parents to get early intervention and early diagnoses.

Rep Norton now wants to give them more authority to screw autism families.


DHS again while their leadership intentions are noble sucks (not a typo) at most things autism. They still have not even sent to CMS (Center for Medicaid and Medicare) the autism benefit law that passed almost a year ago. Currently, DHS discriminates against low income managed care kids because it denies ABA autism therapy while it approves wealthier mostly caucasian fee for services autism families.

Rep Norton now wants to give them more authority to screw autism families.


DEED – where shall I start, they can not even name one Somali autistic person they helped find employment even though they are the Department of Employment. The last ASD TF chair was from DEED and said she did not have time for this.

Rep Norton now wants to give more authority to screw autism families.


You see – these four state agencies have either failed or still continue to fail autism families. But who cares about that – let’s give them more unfunded mandate to fail us. All because Rep Norton can’t rest until
every minority autism family is silenced.


HF 2282 wants to eliminate, dismantle and take power and voice from parents passed through House Health and Policy committee today 3/14/2014 chaired by Rep. Liebling. Also, a DFLer and Rep Norton’s BFF. Oh and her side kick bully of all things minority – not just autism families, it turns out. Isn’t interesting in the ever progressive and sooo welcoming MN DFLer’s especially in the house keep delivering a one two punch against Somali autism families. Why do we keep voting for them? Think about it.


Nevertheless, while all of this can seem discouraging and overwhelming. Don’t get discouraged though because there is a way to win over this insanity through our votes. If we can learn to use our votes wisely and vote for those that not just say couple of Somali words in elections, but actually address our issues at the Capitol.

Rep Nelson, Rep Liebling and Rep Norton are all beatable this year. They have a large minority voters including many Somali autism families and relatives.


The good news is their partner in bad policy Rep Huntley who chairs Health Finance in the House is retiring this year. Thank God. Huntley is an interesting character, it is difficult to understand why he votes with them or even allows stupid legislations by Rep Norton in his committee. If you see him, he looks like the White version of Nelson Mandela. He is quite, low key and very smart. Yet he always sides with the insane state legislators.


Remember when you were young and you had a baby sitter that let you eat ice cream and cookies for dinner and let you do whatever, and not tell your parents. Well – Rep Huntley is like that he just lets the insane DFL legislators run wild and bring silly and needless bills into his committee.


Anyway, It is sad after having the gavel for years in the most important health committee – he leaves at a time that minority health is the worst in Minnesota. I wish he practiced a little more cautious and restraint and told Norton or Liebling NO once in a while.


Finally, If you live or are running or want to run in the following districts in Minnesota – please let us know. We in the Somali autism community are tired of legislators that take our votes for granted.


District 40A  is now held by Rep Michael Nelson, a DFLer has 52.5% minority and 30.3% African American. I think anyone of color can probably beat him.


District 26A is now held by Rep Tina Liebling, a DFLer has 21% minority – 14% are Black and Latino. I think anyone can also win here. She is not effective and even bullies members of her committee and sometimes public testifiers.


Last, but hopefully the first to defeat is Rep. Norton, a DFLer only has 15% minority and only 5% Black. But her bad policies have affected all minority autism families in Minnesota. We are hoping a Somali can challenge her soon. In 2012 election, Norton won by 3144 votes over GOP, Melissa Valeriano. If there is a will – there is a way in this case. Plus, the last legislator that was against MN Autism Task committee was Sen Lynch and we defeated her.


One interesting comparison – all four Minnesota Minority Councils were criticized by a legislative report. I wonder if Rep Norton will now write a bill to dismantle them too since dismantling and eliminating is her forte. Here is that story:


On a related note, Rep Moran the only African American in this committee who should really be standing up for us was not present. Nor was Rep Diane Loeffler who represents NE Mpls which has lots of Somalis. I wish they came and spoke for their constituents rather than allow Norton and her side kick bully Liebling bully our families. It will interesting to see how they vote on the House floor which is a roll call and records how they all vote. Again, we need to watch their votes, not because they learned how to say MAHADSANID OR GALAB WANAAGSAN.


If this was not true, it would be funny given these same legislators themselves are creating their own task forces and committees, such as HF 2932 by Rep Liebling.

HF 1897 by Rep Liebling.

HF 0523 by Rep Liebling decreased disability council members, (I wonder what she has against people with disabilities) but not eliminate as she wants for the Autism committee. unnnhhh interesting!


Thanks!


Above words do not represent any committee, agency or candidate.

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on Angry Black Autism Mom – Never let them label us

Here we go again;

Let’s think about this, Minnesota takes 3rd happiest state to live even ahead of Hawaii, imagine that. I know you are thinking, happiness in minus 40 degrees, snow taller than street lights that lasts for almost half of the year, come on. Really it is true.

You see the weather is not really what makes people happy. It is the economy, state of health, education & employment rate that make one’s life happy or not so happy.

Now, what does this have to do with autism and why would I write a post on it.

Minnesota enjoys good economy, low unemployment rate, good health and good education. It even has good autism coverage, never mind it is for few hundred privilege mostly White families while the low income mostly minorities still get screwed. Meanwhile, DHS is still asking and wondering rather than correcting the inequality years later and almost a year even after the law of autism equality passed in 2013.

However, happiness seems to be one sided because minorities in this happy state have one of the worst health disparity in the country, bottom five education gap, highest unemployment for African Americans and lowest home-ownership. All research and fact based and not my Black angry woman opinion – by the way.

So, how can some do so well here while communities of color suffer in every corner? How did you vote last election cycle because it has everything to do with it.

Well – that is because if you are a minority person, especially Black and you dare ask for different policies – you guessed it. You are called the angry Black woman. Yes, that syndrome that only minorities seem to suffer, as if we need one more. And, in my case – it’s the angry Black autism mom. So, I started comparing how I advocate and what I ask of policy makers and state agencies to how White autism mothers do it.

Well – needless to say, there is no comparison. There are hundreds of autism blogs who are for or against something autism and let me tell you – By comparison to me, they drive airplanes while I don’t even drive a bicycle.

Here is the difference, when a White autism mom blogs about some government agency, politician, provider, doctor, etc – they are doing it out of compassion and frustration. Therefore, we must be understanding, patient and hear them. There are many many many autism schools, policies and issues started by pissed off caucasian mothers who wanted to help their kids. Yet when they did it – annoying might have been the worst name they got. For instance, Fraser was started by a mom who had a child with a disability and changed how Minnesota looked and treated children with disabilities. Mrs Fraser frustrated and probably pissed off many policy makers. Angry White mom – she was not. And there are plenty like her such as founders of Pacer, etc.

By the same token, when a Black mom does it and God knows there are hardly any, they are angry, difficult to work with and labeled angry Black woman syndrome. Think about that for a minute. Could this be why you hardly see minority autism blogs & advocates. They say it is better to get beaten physically rather than mentally. This is the game played on minority autism advocates, call them angry, burning bridges, difficult to work with, blah blah that way they get so tired and leave the scene. You see – if you are beaten down mentally, it is hard to get up from it. Whereby if you are beaten physically, with time it heals.

We all know in America it is a White man first, then White woman then Black woman then last is Black man. This is how and why disparity is created in every corner and in every valley. Someone recently said to me – they bully you and call you angry Black autism mom at the MN State Capitol – are you OK?

You see, that useless name calling just energizes me like the energizer bunny or ten energy drinks. I remember last year when I was advocating for equal autism therapy in Medicaid mind you. One would think Medicaid would be for low income kids. Not in Minnesota, it is for the wealthy mostly white autism families. Anyway, Rep Liebling who has about 30% minority in her district tried to bully me. Keep in mind, the Caucasian red Tshirt wearing gang were filling the capitol by the dozens wanting to take $25 million from Health and Human services budget for themselves and throw low income MA autism kids under the bus.  Yet, they were the compassionate and tired parents and I was the angry Black mother.


Way talaayeey – tol beelay. Somalidu intay codayso ayay seexataa! Nin seexday, hooyadiis baa qadisa.

At any rate, I answered Rep Liebling back and told her in a nutshell autism might have silenced our children, but it will never silence their parents. Many people came up to me, gave me hugs and kept asking if I was OK. I remember telling one of them – she just energized the crap out of me to even advocate more for my son and other children like him. Then I went to Target, bought a poster, wrote MN DFLers are bias and bully minorities and demonstrated in front of her health policy committee. Then I came home and blogged like there was no tomorrow. Rep Liebling bullies a mom.

You see, this is the game – beat us down mentally so that we give up, get tired and accept the status quo of disparity, inequality and despair. We can’t, We must not and we never will. The goal is for any policy maker who neglects to address the issues of their voters to simply campaign against them and vote them out. Fool me one election cycle, shame on you. Fool me every election cycle, shame on us.

They might have the gavel for couple of years, but we have the votes to kick them to the curve. Time to kick Rep Norton out of office and away from creating and writing anymore bad autism policies is 2014. We must vote her out. HF 2282 which wants to eliminate a children’s committee that deals with a medical condition that is higher than pediatric diabetes, aids and cancer combined is not only out of touch, but is cruel. Less than every 20 minutes, a child is diagnosed with autism and a family’s life is altered. Rep Norton from Rochester cannot mentally beat us down, we must beat her by replacing her. Come on, we can do it. Our votes matter and she is beatable.


Interesting side note, remember when Rep Winkler called a Black Judge Uncle Tom because of his vote. I wonder what Rep Winkler calls himself now since he voted against a free autism committee helping many minority autism families? Read that here:

In addition, Rep Nelson, Theis who replaced Gottwalt (who helped autism, really miss him), Peppin and Kahn all represent districts with Somalis and voted against Somali autism families. Rep. Kahn is probably the easiest to vote out, but they are all beatable. 

Remember them in Nov 2014 and kick them to the curve.

How happy non minority Minnesotans are:

One of my favorite caucasian autism bloggers that call it from the hip:

Thanks!
Above words do not reflect any committee, agency or candidate
Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on Explaining HF 2282 which Eliminates MN Autism Task Force a Year Early – Why?

As you might have heard by now, Rep Norton (DFLer) from Rochester who just joined Minnesota Autism Task Force few months ago wants to do away with it and eliminate the whole Autism task force.

She introduced HF- 2282 which passed out of Government Operations Committee chaired by Rep Nelson (DFLer) from district 40A.

Who voted to eliminate and who voted to keep MN ASD TF will be in a different post later. (to say I was speechless would be an understatement by this committee)

Alright, so what does this bill do? and what/how MN ASD Task Force started;

1. HF 2282 eliminates and dismantles Minnesota Autism Task Force created in 2011 and is suppose to sunset in June 2015. It was authored by Sen Senjem – R from Rochester and Rep Mack – R from Apple Valley.  It has a charge to write and implement a statewide autism plan. There are 19 members consisting of four legislators, advocates, parents and providers. It has met once a month on most times even though the charge only asked to meet few times a year. It has a draft state plan which still needs lots of work, such as forming subgroups and coming up with a thoughtful and holistic autism plan that benefits and supports children and adults with autism across the spectrum and across lifespan.

2. HF 2282 states state agencies – MDH, DHS, MDE and DEED will implement the autism statewide plan. The problem is it is not final, did not have thoughtful discussion by the members or heard from the public.

3. HF 2282 states diverse, under-served communities will have couple of times per year to be heard. That is too little, not enough and enhances inequality.

4. HF-2282 takes any power and voice from parents and advocates and gives full power to state agencies. In other words, it diminishes parent empowerment.

5. MN Autism task force only has one more year, so why rush it?

6. MN Autism task force costs the state nothing and has zero fiscal note.

7. MN Autism Task Force has given autism community a voice and HF 2282 wants to take it away prematurely.

8. HF 2282 wants to implement a plan that is currently a draft and not ready for prime-time.

9. Autism is very complex medical condition and has many changing parts including the new DSM – 5, over 90 research last year alone that were published and eliminating a volunteer parent based task force that sorted it all will hurt MN autism community immensely.

10. Why the rush to dismantle autism task force that is needed so much and only has a year left anyway?

My take and views are;

1. Let the Minnesota Task Force which costs the state zero continue and do what it was created for, that is to write and IMPLEMENT a statewide autism plan with collaboration from all four state agencies, such as DHS, MDH, MDE and DEED.

2. Afterwards, create a Minnesota Autism Commission that has representatives from both parties to get equality, minorities, rural folks, all four necessary state agencies, ASD therapy providers and researchers that is permanent and has funding allocated for staff.

Therefore, there is absolutely no reason or need to rush, dismantle or eliminate current MN Autism Task Force by force and dictatorship which is exactly what HF 2282 by Rep Norton wan
ts to do.

Finally, what I would like and hoped was if the authors of MN Autism Task Force – Sen Senjem and Rep Mack actually fought for their bill to survive rather than allow Rep Norton bully and eliminate. They say – you can lead a horse to water, but you can’t make him drink it. I as a parent or even as an advocate can’t fight to save a bill, that is the job of the legislature that created it. It is too bad and sad they don’t fight for their bill.


One really interesting vote and much more on later post was Rep Kahn (the woman who got beat by a Somali in last caucus voted to eliminate MN Autism Task Force). I can’t wait to see how she explains this to Cedar/Riverside Somali community. I watched her mouth like a hawk as they voted to eliminate MN Autism Task Force.

Thanks!

Above words do not reflect any committee, agency or candidate.

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized